Speaking Out ~ Living With HD

Mary At-Risk
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Mary At~Risk
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without the express written permission of the author.
Mary lives in California and is at risk for HD.

What Issues Do You Deal With Living With HD That Is The Hardest For You?


The hardest thing for me is the wondering if my 2 brother or myself have it.  It is also really hard for me to watch my mom go through this.  She is starting to show slight symptoms and it's hard to see it happen to her.


Has Living With HD Affected Your Education? (Absenteeism/Lack of Concentration/etc.)


It affected me a lot through high school, but I'm doing a lot better with it now.  I am going to start college in January (2003) for veterinary and zooology.  It has been my dream to do this since I was little and I think that if I do have HD than it is just gonna make me work harder to get to my goal and do what I want to do before I can't.


What Things Do You Do To Help In The Care of an HD parent?  Do You Feel This Is Fair?


My grandfather (who had HD) passed away in January of 2001 and I helped take care of him for many years and now with my mom, who is tested positive, I just support her as much as possible.  It is something that affects the entire family and I think it it fair to support and take care of your loved ones with HD. 

How Does Helping With Your Parent's Care Affect You Socially?  Personally? Financially?


Socially my friends are all right there for me, if they are a true friend they will be there and if  they run from it it, they were not a person who can deal with it and they won't be able to support you and your family anyway. 


Personally it affects me more because I worry about my other family members, if I  have it I'm gonna live my life and have a great time doing it. 


Financially it has not affected me or my family at all except when my grandpa was still alive.


What Advice Would You Give to A Young Person Living in A Volatile HD Family Environment?


Support and love is all you can give, be there for each other and the most important thing of all is to be able to openly TALK with each other.


How Have You Handled The  Anger You May Feel Living With HD?  What Has Worked Best For You?


Again I say TALKING it out is the most important thing you can possibly do.  It is hard for some to talk it out and it really does help.  also, give all the love and support and you will receive it in return.